By: Shannon Florea
I am sharing my health experience with the intentions to bring awareness, courage, and hope, to those who may similarly be struggling and in need of positive reflection. I haven’t talked much about my health issues or shared it with a lot of people, mostly because it took such a long time to figure out and get back healthy again, but also because I didn’t want it to define me, to seek anyone’s pity, or to seem like I was making excuses. Anyone that knows me is aware that those philosophies don’t work for me.
I first started noticing something was wrong with the way I felt in the fall of 2016. I almost collapsed at the finish line of the Superfrog 70.3 race due to shortness of breath, which was both really strange and scary. This served as the inciting event leading to a long line of heart, lung, and metabolic testing and a string of different specialist doctor evaluations – all of which revealed healthy results, nothing clearly out of the ordinary, and the common gleaning remark of “you’re probably just doing too much and need to back off a little bit.” I heard that remark so many times, yet the reality was that I was already backing off because of the symptoms and nothing was getting better! The only abnormality readily identified was that my thyroid hormone levels were very high, which was weird and new and felt to be the cause of my symptoms.
But the strange thing was to understand why? I had previously been diagnosed with Graves disease, which is an autoimmune disorder causing the thyroid to be overactive. This was originally in 2006 and I was treated back then using radiation and stabilized. As a result, I have to rely on thyroid medication to provide this hormone as my thyroid gland is supposed to be no longer functional. I have been hormonally stable on replacement ever since 2006, but my thyroid levels were so high that my endocrinologist assumed that my Graves had reactivated. We titrated and started new medications, but frustratingly, my thyroid levels continued to be all over the place both high and low.
In the spring of 2017, I progressed to feeling worse with headaches (ocular myopathy), muscle pain, extreme fatigue to the point were getting out of bed was tough. More testing commenced, and this time we found something else– I had also developed adrenal insufficiency on top of uncontrolled thyroid dysfunction. A few weeks later, I woke up with ringing in my ears, which I convinced myself was just part of everything going on with my thyroid. But eventually this lead to an evaluation by an otolaryngologist who informed me that I had already lost some of my hearing and I was diagnosed with autoimmune inner ear dysfunction and resultant hearing loss, and that sometime soon may lose all my hearing. I was offered high dose steroids and chemotherapy, but eventually opted for the more conservative approach with low dose steroids and multiple hormone controlling medications.
All during this time, I kept trying to push myself with triathlon training, as I was fortunate enough to have qualified for both 70.3 and 140.6 World Championships for 2017. My training was subpar and felt terrible, but I was thankful for every bit that I was able to do given the situation. During the summer months, my endocrinologist and I settled on a 4 drug regimen. Things slightly improved, but my thyroid levels continued to bounce all over the place requiring new doses of medicine literally six weeks. I was fortunately stable for a few weeks that overlapped with 70.3 worlds, but then I soon started to feel off again and the fatigue and muscle pain just worsened – all signs my thyroid again was out of whack, which it was. I was so worried as Kona was looming and had little time to fix things. My endocrinologist rechecked my labs for the umpteenth time, and when she saw that they were again abnormal, she told me “I can’t figure out your pituitary” and that it had to be something else causing these fluctuations, maybe a malabsorption problem. I was beyond frustrated by this point with not being able to figure out what was wrong or how to get healthy again.
The following days leading up to Kona were filled with quite a bit of disappointment and angst. I didn’t feel well, I didn’t feel ready, and I didn’t feel like I understood why my body was reacting the way it was. I did what I could to deal with some of the issues – massages for the muscle pains and lots of rest in bed for the fatigue. My hopes were not very high come race day as the second the cannon blew, I knew it was going to be a slug-it-out-and-just-finish kind of day.
I again was taken to the medical tent at the finish where I received IV fluids, magnesium, steroids, even offered (not taken) a valium due to severe muscle spasms and pain. To make it more exciting, I had also brought my CAM walker boot with me to Hawaii as I knew from the pain in my foot leading up to the race that I had again developed a stress fracture, another thing that has been a recurrent issue the last several years.
When I got back home I started reflecting more about why this was happening to me. I had just turned 40 and it seemed like maybe I was falling apart. I couldn’t understand it as I had the motivation, the support systems and resources within my family and friends, but I just couldn’t control what was happening to my body. It wasn’t until around the same time, I received a notification from a genetic service called 23andMe that I carried the celiac HLA-DQA1 gene, and with this information I had a profound eureka moment.
As a trained Rheumatologist, I have long known of autoimmune cluster associations, but I just never thought that I would fall into this category. I immediately thought “OMG, what if I have celiac disease and this ties everything together” and it all makes sense. The specific group of problems with my adrenals, thyroid, hearing, and other symptoms I was experiencing and the malabsorption issues with Synthroid could all be tied together by Celiac enteropathy. The gold standard test for this is to do a small bowel biopsy (which I obviously was not jumping for joy over). After I brought this up with my endocrinologist, we discussed options and I decided to go gluten free with my diet and to see what happens. It took a lot of work in the kitchen and lots of support from my pizza-and-cookie-loving-husband to make the gluten changes happen. After about a month, I started feeling much better and over the past six months, I have been able to stop steroids and get off several medications as my thyroid levels have normalized and are the best they have been in almost 2 years. I am happy to report that I currently feel great and my training workouts have improved. I am able to handle more training stress, push harder and feel better. I am looking forward to enjoying being healthy again and continue to push myself with training and race goals.
I know this is not the end of my health issues, because being a big bag of autoimmunity seems to always have its ups and downs. I still struggle with the damage that has been done with the hearing loss and tinnitus, the increase in needed recovery, decreased bone density and stress fracture risk, and the arthritis and pain in my right foot. But for now, I am enjoying my progress and learning to live with the blessings and challenges that I am given. I hope that sharing my story may help others that are struggling and frustrated, as the biggest lesion that I have learned through this is to never give up on your passion and dreams. So many times by so many people I was told to stop, to relax, to give in. Something inside me just couldn’t and I am so glad I didn’t. This journey reminds me of my favorite Japanese Proverb “fall down seven times, get up eight”. As for me, I will always and forever, get back up. I am happy to report that I have recently raced and earned a spot to toe the line again this October at the Worlds Championships in Hawaii, where crossing fingers I will be healthy, fit, and gluten free!